Stage IIA, T3, N0, M0 rectal cancer - new diagnosis

Hello,  I found out 21 days ago that I have a nickle sized cancerous tumor in my rectum.  I'm 56.  Stage IIA, T3, N0, M0.  I start chemo and radiation treaments on Monday.  I feel like Sunday, September 9th will be my last normal day of life.  Once the chemo (Xeloda) and radiation kick in I am afraid of hair loss, and diarrhea, incontinence, etc.  Like everyone else I guess.

Any advice on how to deal with all this?  The chemo?  The radiation?  The fear?  I'd like to hear from folks who are or were in a similar situation.

Thanks.

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Comments

  • Tunadog
    Tunadog Member Posts: 235

    I would wait until I had a problem 

     

  • mountainhiker
    mountainhiker Member Posts: 54
    Words of wisdom

    My situation was a bit worse than yours (stage iv, liver mets) and I'll just tell you what one of the wonderful nurses at my oncologist told me when I was trying to plan out every detail of my upcoming cancer journey.  She simply said: "You haven't even had your first chemo treatment yet.  Relax and take this one day at a time."  

    Welcome to the forum.

    mountainhiker

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,262 Member
    Preparation

    Everyone is different.  If it were me, I would get as much exercise and good nutrition as possible before the chemo.  Also, a bit of advice from this board that I followed to my advantage was to use a heavy cream (Eucerin for me) on your hands and feet, starting immediately.  It might make sense to get a prescription for an anti-nausea med in advance of starting treatment.  If you want a preview of possible side effects, you might search the posts for Xeloda/Capecitabine postings.  Sorry you are here, but you will likely find this board to be a good source for information about side effects and strategies.

  • Steven Christopher 1962
    Steven Christopher 1962 Member Posts: 6
    edited September 2018 #5
    Thanks

    Thanks, Tunadog.

  • Thanks for the replies

    mountainhiker, I'm trying to take all this one day at a time.  Some days it feels like a tsunami though.  Thanks.

    SandiaBuddy, thanks for your comments.  I've already got the anti-nausea meds if I need them.  I'll check for info on the Xeloda.

    I have to keep reminding myself that people have lived through this.  I hope to be one of them!

  • Mikenh
    Mikenh Member Posts: 777
    I'd suggest doing some

    I'd suggest doing some logistics planning in setting up a system to take the Xeloda and tracking it and in getting to/from the radiation facility and making sure that you drink 20 or 24 ounces of water before your appointment (the radiation center should talk to you about that).

    I found very little in the way of effects of the chemo and radiation until the third week. I think that the Xeloda can cause diarrhea while the radiation can cause constipation. Miralax and Imodium are often suggested to control them.

    The Xeloda will likely knock your white and red cell counts so you will feel tired and your body won't be as able to fight infection so maybe limit the amount of time in places where people may be sick. Get any needed dental work done before you start.

    The issues with burning skin showed up around week 3 or 4 for me. Your doctor may have product samples to help deal with the burning issues. Going to the bathroom can become very painful too, especially near the end. The pain stopped around two weeks after the end of treatment for me.

    You might consider Depends Shields for Men. These are small pads that go in your underwear to contain small leaks.

    The cancer stuff is a long and tough journey but we'll help you through it.

     

     

  • plsletitrain
    plsletitrain Member Posts: 252 Member
    Expectations

    Its good to prepare yourself for the worst but don't let it get into you.  That was what I did and I found out I was able to manage through it all, that I was stronger than I thought I'd be.  I'm still on chemo now and the effects are cumulative so its a bit harder but I know this too shall pass.

    Good luck on your treatments.  Its not as bad as you'd think it be.  Xeloda or radiation (I think) doesn't make you lose your hair.  I think the worst side effect I've experienced is fatigue and loss of appetite.  You'll get through it just fine.  

  • Trubrit
    Trubrit Member Posts: 5,628 Member
    The chemo, the radiation, the fear

    Oh, how I remember the stage you are at now.  The good thing is, soon you will be at the stage WE are now. But, until then, roll with those feelings of fear. They will be with you forever, just not as intense as they are right now. 

    Stage II is better than Stage III which is better than Stage IV. So think on that, and give thanks to the universe, God or the space above you. But, it doesn't matter the stage at the end of the day, its Cancer, and Cancer is scary. 

    Chemo. I did the Oxaliplatin and 5FU, so can't help with the Xeloda, except listen to our friend Sandiabuddy. Slather up those hands and feet, because once the skin splits, it heals very slowly if at all, during chemo. 

    Radiation. I could scare the poop right out of you telling you how bad it was for me. But for many folks, it isn't so bad. Just be prepared. Be prepared for it to be bad, while hoping for it to be good. My advice in preparation for radiation is to buy some Depend underwear. Keep a spare set of unders and trousers in the car, and pray you don't need them.  I was very thankful for the Depends - Depends were my friends (past tense). 

    Pure Aloe vera worked well for my radiation burns. Not the gel kind, but organic and pure. You have to keep it in the fridge.  Its really a matter of finding out what works best for you, but always good to have something on hand. I also use Vitamin E oil. 

    A good suggestion though is to try and take it one day at a time. Don't look ahead too much, when you've enough on your plate right now. 

    I'm sorry for your diagnosis. 

    Tru

     

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Same

    I'm so sorry to hear of your diagnosis.  Read my "About Me" page.  Mine was also the size of a nickle.  I'm not sure what my staging was as you put yours, but you will probably go through about exactly, or close to, what my schedule was.  It has been over 9 years since my treatment, but I'm sure the protocal is close to the same.  We are here to help you get through this.  Let me know if you have any personal questions.  There are a lot of the issues that affects you that doctors don't tell you about.  Keep us up to date on what's next on your journey.  Wishing you well and a complete recovery.

    Kim

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Tomorrow

    Tomorrow I'll write a little more on my experience.  Just wondering if they mentioned anything about an ostomy, or temporary and if you are having surgery.  A little more info would be helpful if you know. 

    Kim

  • Steven Christopher 1962
    Steven Christopher 1962 Member Posts: 6
    edited September 2018 #12
    Thanks for the responses!

    Thanks folks!  

    To Annabelle41415: How do I look at you "About Me" page?  Also, the doctor does want to give me an ostomy bag while the TME surgery heals.  I thought it would only be there until the surgery heals, but the chemo doctor wants me to do four and a half months of chemo after that.  So it looks like I have to deal with the ostomy bag for five months, or more.  I am not looking forward to that.

    Another question I have for folks, I'm wondering about the need for the chemo after surgery.  They are going to give me radiation and chemo to kill the cancer cells before surgery, then cut the cancer out.  What good is the chemo afterwards?  Especially four and a half more months of it?  Not sure if I want to go through any side effects of the chemo for that long if I don't have to.

  • Steven Christopher 1962
    Steven Christopher 1962 Member Posts: 6
    edited September 2018 #13
    Mikenh said:

    I'd suggest doing some

    I'd suggest doing some logistics planning in setting up a system to take the Xeloda and tracking it and in getting to/from the radiation facility and making sure that you drink 20 or 24 ounces of water before your appointment (the radiation center should talk to you about that).

    I found very little in the way of effects of the chemo and radiation until the third week. I think that the Xeloda can cause diarrhea while the radiation can cause constipation. Miralax and Imodium are often suggested to control them.

    The Xeloda will likely knock your white and red cell counts so you will feel tired and your body won't be as able to fight infection so maybe limit the amount of time in places where people may be sick. Get any needed dental work done before you start.

    The issues with burning skin showed up around week 3 or 4 for me. Your doctor may have product samples to help deal with the burning issues. Going to the bathroom can become very painful too, especially near the end. The pain stopped around two weeks after the end of treatment for me.

    You might consider Depends Shields for Men. These are small pads that go in your underwear to contain small leaks.

    The cancer stuff is a long and tough journey but we'll help you through it.

     

     

    Thanks

    Mikenh,

    Thanks for your honesty.  Wearing Depends or Shields was/is a fear of mine.  I hate this.  I'm glad to hear that you adapted and lived through it.  That gives me hope.  I just don't know if I have the strength for this.  I'm trying to focus on today - the one day at a time motto.  

    When you wore the Shields, is that something you just put on everyday before you went out?  Only during the radiation treatments?  For a while after the treatments ended?

  • Steven Christopher 1962
    Steven Christopher 1962 Member Posts: 6
    edited September 2018 #14
    Trubrit said:

    The chemo, the radiation, the fear

    Oh, how I remember the stage you are at now.  The good thing is, soon you will be at the stage WE are now. But, until then, roll with those feelings of fear. They will be with you forever, just not as intense as they are right now. 

    Stage II is better than Stage III which is better than Stage IV. So think on that, and give thanks to the universe, God or the space above you. But, it doesn't matter the stage at the end of the day, its Cancer, and Cancer is scary. 

    Chemo. I did the Oxaliplatin and 5FU, so can't help with the Xeloda, except listen to our friend Sandiabuddy. Slather up those hands and feet, because once the skin splits, it heals very slowly if at all, during chemo. 

    Radiation. I could scare the poop right out of you telling you how bad it was for me. But for many folks, it isn't so bad. Just be prepared. Be prepared for it to be bad, while hoping for it to be good. My advice in preparation for radiation is to buy some Depend underwear. Keep a spare set of unders and trousers in the car, and pray you don't need them.  I was very thankful for the Depends - Depends were my friends (past tense). 

    Pure Aloe vera worked well for my radiation burns. Not the gel kind, but organic and pure. You have to keep it in the fridge.  Its really a matter of finding out what works best for you, but always good to have something on hand. I also use Vitamin E oil. 

    A good suggestion though is to try and take it one day at a time. Don't look ahead too much, when you've enough on your plate right now. 

    I'm sorry for your diagnosis. 

    Tru

     

    Thank you!

    Tru,  thank you for your response.  It's helpful to hear from people who have gone through this.  The doctors and medical team are helpful, but no one has said anything about the possibility of needed Depends or pads.  Ugh!  Did you just put the Depends on before you left the house everyday?  Or only during the radiation or chemo treatments?

  • Trubrit
    Trubrit Member Posts: 5,628 Member

    Thank you!

    Tru,  thank you for your response.  It's helpful to hear from people who have gone through this.  The doctors and medical team are helpful, but no one has said anything about the possibility of needed Depends or pads.  Ugh!  Did you just put the Depends on before you left the house everyday?  Or only during the radiation or chemo treatments?

    Every damn day!

    Sorry, I couldn't resist. 

    Yes, I had to wear them everyday. For the most part it would 'catch' what was coming out, enough for me to get to the loo and clean up and not get it all over my clothes (which has happened more times than I care to tell).  They are basically made for urinary incontinance, so don't absorb the feces. But, it is better than your cotton underwear. 

    And, it doesn't last forever. Don't worry about wearing them, let them be your friend, and then, when you're all through with this, it will be all in the past.  

    Good luck!

    Tru

  • Trubrit
    Trubrit Member Posts: 5,628 Member

    Thanks for the responses!

    Thanks folks!  

    To Annabelle41415: How do I look at you "About Me" page?  Also, the doctor does want to give me an ostomy bag while the TME surgery heals.  I thought it would only be there until the surgery heals, but the chemo doctor wants me to do four and a half months of chemo after that.  So it looks like I have to deal with the ostomy bag for five months, or more.  I am not looking forward to that.

    Another question I have for folks, I'm wondering about the need for the chemo after surgery.  They are going to give me radiation and chemo to kill the cancer cells before surgery, then cut the cancer out.  What good is the chemo afterwards?  Especially four and a half more months of it?  Not sure if I want to go through any side effects of the chemo for that long if I don't have to.

    It's your call

    and its a hard one. 

    You don't have to have mop-up chemo, but if they suggest it, then its a decision you have to think carefully about. 

    There are folks on the forum who have chosen not to have mop-up, and I'm sure they will be along soon to share their advice. But I also know one member, who visits very seldom, because her husband has passed, who would tell you her story, as sad as it is. Her husband went from Stage I to Stage IV, and then passed. It happens, sadly. And for others, they go about their lives with no recurrance and live 'happily ever after'. 

    Only you will be able to make that decision, but you have done the wise thing in asking for others advice. 

    Just to jump in and answer your question to Kim. If you hover your cursor over Anabelle's name in the blue sidebar, then click, it will take you to her profile page, and I believe there is where you can find her story. 

    Tru

  • Mikenh
    Mikenh Member Posts: 777

    Thanks

    Mikenh,

    Thanks for your honesty.  Wearing Depends or Shields was/is a fear of mine.  I hate this.  I'm glad to hear that you adapted and lived through it.  That gives me hope.  I just don't know if I have the strength for this.  I'm trying to focus on today - the one day at a time motto.  

    When you wore the Shields, is that something you just put on everyday before you went out?  Only during the radiation treatments?  For a while after the treatments ended?

    I started using Depends

    I started using Depends shields when I noticed leakage. And I just wore them to keep things cleaner. The Shields are pretty small. Things will likely get pretty rough in the second half of the treatment as the radiation has to go through your skin to get to the tumor. You may have an easier time of it as your tumor is a lot smaller than mine was. It's possible that you will get a Pathalogical Complete Response as well and not need surgery; maybe just followup chemo.

    The Shields are not diapers. They are just small pads.

    This is a video of me hitting tennis balls (I'm in the foreground) on my next to last day of chemo and radiation and I am wearing the Shields. It doesn't look like I have cancer or am on chemo and radiation. So your capabilities may be somewhat limited but most can generally function.

  • Mikenh
    Mikenh Member Posts: 777
    Trubrit said:

    Every damn day!

    Sorry, I couldn't resist. 

    Yes, I had to wear them everyday. For the most part it would 'catch' what was coming out, enough for me to get to the loo and clean up and not get it all over my clothes (which has happened more times than I care to tell).  They are basically made for urinary incontinance, so don't absorb the feces. But, it is better than your cotton underwear. 

    And, it doesn't last forever. Don't worry about wearing them, let them be your friend, and then, when you're all through with this, it will be all in the past.  

    Good luck!

    Tru

    You can use Depends for fecal

    You can use Depends for fecal incontience by putting a pad on the back. I'm doing that right now. I also have some fecal incontinence things on order from Amazon which I'll try out as well. I've discovered Imodium so things are improving but I have to experiment with it to work on regaining control. I didn't have large issues on radiation - it was just very small dribbles.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member

    Thanks for the responses!

    Thanks folks!  

    To Annabelle41415: How do I look at you "About Me" page?  Also, the doctor does want to give me an ostomy bag while the TME surgery heals.  I thought it would only be there until the surgery heals, but the chemo doctor wants me to do four and a half months of chemo after that.  So it looks like I have to deal with the ostomy bag for five months, or more.  I am not looking forward to that.

    Another question I have for folks, I'm wondering about the need for the chemo after surgery.  They are going to give me radiation and chemo to kill the cancer cells before surgery, then cut the cancer out.  What good is the chemo afterwards?  Especially four and a half more months of it?  Not sure if I want to go through any side effects of the chemo for that long if I don't have to.

    Sorry

    I've gotten on the board so late I'm not able to post what could benefit you.  If you click on my name "Annabelle41415" and then look to the top of the page in the light green space there will be an "about Me" page.  It will tell you what I've been through.  The need for chemo after is called "mop up" if there is no spread.  It is supposed to ensure that no cells have been released to float or escape and then attach to other organs after surgery.  Radiation and chemo works for several months after quitting so it is still effective even though you are done.  They want to let it do it's job to kill as many cancer cells as possible to get a clean margin when doing surgery.  Then after that to do "mop up" chemo to kill the left over cells that might have been released.  Once again, I'm sorry this post is so short.

    Kim

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Trubrit said:

    It's your call

    and its a hard one. 

    You don't have to have mop-up chemo, but if they suggest it, then its a decision you have to think carefully about. 

    There are folks on the forum who have chosen not to have mop-up, and I'm sure they will be along soon to share their advice. But I also know one member, who visits very seldom, because her husband has passed, who would tell you her story, as sad as it is. Her husband went from Stage I to Stage IV, and then passed. It happens, sadly. And for others, they go about their lives with no recurrance and live 'happily ever after'. 

    Only you will be able to make that decision, but you have done the wise thing in asking for others advice. 

    Just to jump in and answer your question to Kim. If you hover your cursor over Anabelle's name in the blue sidebar, then click, it will take you to her profile page, and I believe there is where you can find her story. 

    Tru

    Thank you Tru

    Thanks Tru, it was nice of you to help him out.  I've been getting on the board so late, I'm glad you were able to explain it.

    Kim

  • Mikenh
    Mikenh Member Posts: 777

    Thanks for the responses!

    Thanks folks!  

    To Annabelle41415: How do I look at you "About Me" page?  Also, the doctor does want to give me an ostomy bag while the TME surgery heals.  I thought it would only be there until the surgery heals, but the chemo doctor wants me to do four and a half months of chemo after that.  So it looks like I have to deal with the ostomy bag for five months, or more.  I am not looking forward to that.

    Another question I have for folks, I'm wondering about the need for the chemo after surgery.  They are going to give me radiation and chemo to kill the cancer cells before surgery, then cut the cancer out.  What good is the chemo afterwards?  Especially four and a half more months of it?  Not sure if I want to go through any side effects of the chemo for that long if I don't have to.

    The reason for the ostomy is

    The reason for the ostomy is for the the healing after surgery and to make going through chemo more comfortable. Adjuvant Chemo (the chemo after surgery) can result in pretty bad diarrhea and it's a lot easier to deal with it with an ileostomy than with your large intestine. The Adjuvant Chemo is generally more difficult than the Neo-Adjuvant Chemo (chemo before surgery). If you live in an area where it is cold, then it can get uncomfortable.

    Stage 2A is a gray area for Adjuvant Chemo. Some people will do what's called "Wait and Watch", so no Adjuvant Chemo, just surveillance (blood work and scans). It works fine for some and some regret it because they have a recurrence. I have Stage 3B and the protocol is Adjuvant Chemo whether A, B or C. That choice would be up to you and your doctor.

    On surgery: I would recommend getting a board-certified colorectal surgeon. I would further suggest getting your surgery at a major/volume/top cancer center if possible. I had my chemo and radiation locally but went to Boston for the surgery as there aren't any specialist surgeons in my state for working on this kind of cancer.

    Treatment protocols for Stage 2 and Stage 3 are under some experimentation (clinical trials) and change. The protocol is Neo-Adjuvant Chemo and Radiation, Surgery, Adjuvant Chemo, Reversal of the Ileostomy. The newer approach is called Total Neo-Adjuvant Therapy and it's in clinical trials at major cancer centers. TNT starts with 1) Chemo and Radiation and then the old post-surgical chemo or 2) The old post-surgical chemo and then chemo and radiation. If the patient has a pathalogical complete response, then surgery might not be required.

    There's a paper on this at: https://www.sciencedirect.com/science/article/pii/S1533002817300543